Still Undiagnosed IBD?

By CommunityMember590

1 min read

My first experience came on two years ago. I very quickly and suddenly felt very unwell. I had diarrhea which lasted hours, then the bleeding and vomiting started. I went to AE as it wasn't stopping.

I was diagnosed with pancolitis. A few months later I was severely constipated and generally unwell. I went to AE again and was diagnosed with left sided colitis. I am taking meds for IBD which help, but unfortunately I keep going into flares every few months.

I have had all the tests and lost lots of weight, but the spasms are the worst. I still haven't properly been diagnosed, but they are still treating me with IBD meds. I'm confused.

I've been waiting for the next flare so my poop can be examined again, which always shows raised. It will be three years this December and I'm still not diagnosed. 😒

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Richard Faust Community Admin
Hi <inline-mention username="CommunityMember590" user-id="4740211"/>. Many here understand just how frustrating the diagnostic process can be. It is good to hear that the treatments have helped some. Hopefully, as your diagnosis is further defined, your treatment can be further honed to eliminate the bad flares. I do want to share with you this article from our patient leader Sahara on managing expectations after the diagnosis: <a href='https://inflammatoryboweldisease.net/living/diagnosis-expectations' target='_blank'>https://inflammatoryboweldisease.net/living/diagnosis-expectations</a>. She doesn't sugarcoat the reality that IBD, even after diagnosis, can be tough and does change one's life. That said, the important thing is that, while things change, a full and happy life is possible. Please feel free, if you like, to keep us posted on how the test goes and how you are doing. Best, Richard (Team Member)
Traci Musick-Shaffer Moderator & Contributor
<inline-mention username="CommunityMember590" user-id="4740211"/> What test(s) did you go through when you were diagnosed with "pancolitis"? Did you have a colonoscopy? Honestly, that seems to be the best way for a physician to get an actual look at what's going on in your digestive system. Are you seeing a gastroenterologist or just a GP? To me, finding a specialist in the field of the digestive system is another good approach. Also, are you avoiding foods that "trigger" the most pain for you? Eliminating the most vile food offenders can help reduce and/or limit the flares. For example, I can't eat fried eggs nor can I eat any food with gluten in it. If I eat fried eggs or gluten, I can expect pain and intestinal bleeding a few hours after eating. So, I have to say "no" to it. Honestly, so much of IBD is "trial and error." When I find something that hurts my gut, I make a note to avoid it. I also try different natural therapies. If something seems to lessen my pain, I keep using it (psyllium husk, for example). Anyway, please read all the various approaches that members of this forum have written about. Keep in mind that what works for one person may not work for you. Everyone's body is different. So, that's why I call it "trial and error." Read and try other people's approaches to IBD, and tweak it according to your body's response. I hope you find answers and a treatment real soon. Also, I wish you a pain-free holiday season. --Traci, UC-IBD Team Member
CommunityMember590 Member
Hi Traci Musick Shaffer. My very first hospital admission was Pancolitis. They did a CT scan which confirmed this. Then they put me on Octasa 800mg at 6 tablets a day. I was also given Salofalk 2g enemas plus I am on meds for my bones. This seemed to help. Then my Gastroenteritis reduced my Octasa meds to 3 a day. Which didn't go well. Had another flare was admitted into again with left sided colitis. I had a colonsocopy which showed this. So they raised my meds again to 6 a day. I was on steroids for about 3 months which helped. So since this I have had repeated colonscopies some show very little evidence to make diagnosis of IBD and sometimes it shows some evidence of Quiescent colitis. My health at the moment is ok. I have lost alot of weight and I do have horrible episodes of spasms extremely painful then the need to empty bowels immediately. But they do stop. Which I am very grateful for. I do get constipated also and then I get overflow and some blood from back passage. Am learning what makes me worse and better. I am in a good place at the moment but you never know when it will change. My daughter also has Ulcerative colitis now she has a colostomy. I hope you are OK 🥰 
1. thedancingcrohnie Moderator & Contributor
 <inline-mention username="CommunityMember590" user-id="4740211"/> Glad you are doing okay at the moment. I do hope you get relief from your symptoms especially for this holiday season. You are so positive and have a great perspective. How has your daughter been doing lately? Hugs to you both, Elizabeth (team member)